slowly getting better, and ophthalmology assessment

The weather has been very wet and very windy here the last two days, which is a pity because it was beautiful on the weekend. We had a lovely walk at Royal Park on Saturday afternoon. It was warm and sunny, and everyone was happy and friendly, with dogs and people saying hello and being very relaxed. It felt like one of those French paintings of people promenading and relaxing by the river. 

Ben bought some new tyres for my old bike on saturday (a 1979 10-speed road bike), and we went for a ride in the fog on Sunday morning, despite me telling the boys it would be too cold. I was right, it was freezing, and the boys agreed that we should have waited until the afternoon. I rode my bike very carefully for first time since 1998. It was good to ride again, it will be even better when I'm stronger and more confident. I found myself singing and making silly jokes on Tuesday night, it was the first time I've felt like that in ages. It was wonderful to feel normal again, even though Ben asked if I was becoming manic. He's so hard to please... 

It sounded like the roof was going to blow off last night, and I couldn't get back to sleep when I woke at 230 this morning. I found a disturbing post on Facebook from an American Stroke group where a 32 year-old woman wrote in, saying she'd just had her second stroke and was suffering terrible headaches and had started having seizures, and that her local hospital hadn't been able to help because of her young age. Some people had told her to seek a neurology referral, some said she should start blood thinners, but I wrote to say it was imperative that she go to a larger hospital urgently to find out the nature and cause of her strokes - occlusive strokes (due to blood clots) need blood thinners, but haemorrhagic strokes (due to ruptured aneurysms or arteriovenous malformations)  will only bleed more with drugs like aspirin. She should be getting a CT scan and possibly an MRI or angiogram. I didn't say that headaches and seizures are more likely with aneurysms or AVMs, I didn't want to alarm her. I hope she reads my response and gets help. I can't believe she was told they didn't know how to help her because she was young. I felt happy writing my response, and realised I'm missing the satisfaction of feeling like I'm helping people that I used to get at work. It's a pity my energy levels aren't consistent enough for me to go back. I still get very tired each day, and sitting up out of bed is tiring. I hope that my energy levels will continue to improve if I sit up and go for a walk each day. I'm tired of not feeling well. 

I can see why some people get sick of medical tests and medications and refuse to participate any more. It's dispiriting and exhausting to have to keep being compliant when you feel like crap and there's no end in sight. Days like Monday help me keep hopeful about the future, and I'm going to book a regular massage session every couple of weeks to have some regular self-care on my schedule.

The last thing to report is my opthalmology review from last week. I had my visual fields checked, which was a demoralising experience because I could hear the machine moving every time it flashed a light, but I couldn't see a quarter of them. As expected, I have a quadrantanopia in the lower right visual field, but luckily my peripheral vision is pretty good, and my central vision isn't too bad to preclude a return to driving some time in the future. The ophthalmologist said things can be expected to improve for up to 2 years after the surgery, and that we should repeat the assessment in 4-6 months time, and then consider an OT driving assessment, which would involve driving simulation tests and an on-road assessment in a dual-control car. I don't feel ready to drive again yet, so I don't mind waiting until the end of the year to do it. I'm hoping I'll feel better by then.

a pleasant Friday of feeling normal after several weeks recovering from bowel surgery

For the first time in ages, I woke up feeling refreshed today after a good night's sleep. The last few weeks had been really rough going, with nausea, no appetite, fatigue, and pain in my ribs from the GCSF injections. I was spending most days lying down, sleeping, and hoping it would all go away. And worrying that I was losing weight because I had no desire to eat anything, which was affecting my  energy levels.  If I did eat something, I usually had to force myself to eat it, as nearly everything tasted too strong to deal with. My weight dropped to 73kg at one stage, just 2kg more than I weighed when I married Ben in 1998, and my two pairs of jeans are hanging off me like sacks. Sadly, most of the weight has gone from my muscles, my legs look nothing like Elle Macpherson's. Never have, never will. I had a good session with the dietician yesterday, she wrote down some strategies to keep up a healthy nutritional intake, and gave me some handouts that are still sitting in my bag, waiting to be read.

My haematologist was delighted to hear that my ribs have been aching after the GCSF shots, apparently that means that the marrow is being produced properly in my large and long bones, so the small bones are trying to do their bit. She said to stop the injections, do a blood test on Monday (7 days after the last shot), and see how my bloods are looking. It would be nice if my body could start working properly again, it's been so long, I've nearly forgotten what it's like.

I had my final session from the Commonwealth Respite cleaner service today, I was getting one hour twice a week, and it made a big difference just to have someone to vacuum, make the beds, and fold the clothes. We'll have to look for a private cleaner now, I'm still not on top of the decluttering, but the dining room table is starting to look more organised. I'm also going to see if I can find someone to provide assistance with meals at least 4 nights a week. I just don't have the energy or inspiration to stand up and cook, and it would help so much to have a regular person to do it. I can't ask Mum, she's getting old and tired and wouldn't want to give up her busy schedule of activities, my sister lives in Europe, and although I have a few friends who helped with food in the early days, it would be better to have someone regular so that they can get used to our routines. If anyone knows a nursing student in Launceston who would like free room and board in exchange for 10 hours a week of assistance with meals and school pick-ups, please let me know.

It's 430 and I'm getting very sleepy, I haven't napped today. Before I go, I want to tell you about my morning, which I spent buying a present for a friend's daughter's Bat Mitzvah (to be held on my birthday, the 3rd of August), pyjamas for the boys, and a dressing gown for Ben. The cleaner kindly dropped me off in Margaret St, at the foot of the hill from our house, and I walked all the way up Brisbane St to Pierre's (still only open for breakfast on weekends, bother it!), and then around some of the shops in that area. I couldn't finish the large and delicious serving of bircher muesli at Inside Cafe, and made it home by 1130. I'm not quite sure how the last 5 hours have passed, I did throw out some old receipts and paperwork, and had two mugs of minestrone plus some tinned salmon on toast for lunch, but it's been a good day.

Must sleep now, I feel utterly drained. The boys are having their half-hour turns on the computer upstairs, so I'll be able to rest until Ben comes home about 530.

Great news

Fantastic news on the health front! My latest MRI scans show continued shrinkage of the tumour areas in my brain.Another breast surgeon looked at my MRI breast scans from January and suggested we repeat them rather than doing a stereotactic biopsy or prophylactic mastectomy, and my appetite is finally returning after 2 months of nausea. Today I'm heading out to see How to Train Your Dragon 2 with Nathaniel on a sunny day in Launceston. David's at a friends place. I feel like purring.

Activity scheduling, social contact, appetite, increased mental energy. And a warmer day to top things off.

I'm gradually feeling better - my tummy is less painful, my cold is finally going away, and I didn't feel like spending all day in bed like I had for the last two weeks (the combination of hacking cough, runny nose, nausea, tummy pain, headache, and freezing weather made bed a desirable location).
I've decided to be a good psychologist and practice my own medicine, i.e. activity scheduling. So I rang a friend and had a great talk this morning, then I took Ginny for a walk down the road, stopping by at a new neighbour's on a whim. They're a lovely couple with a 9month-old daughter and a sweet little highland terrier. They're doing beautiful things to my old piano teacher's house, and it's nice to see the old place coming to life.

In the afternoon, I rang a builder who has been good at following up on quotes in the past, and he'll come by next week. Ben's started complaining about our house again, and says if we lived in a new house, we wouldn't have to worry about all the things he thinks is wrong with this one. I've done some research, and stamp duty on a similar house would be in the range of $20-30K, plus removal and agents  fees, and the stress of finding a new place, and relocating. Selling our house would not bring us a profit in its current state, it needs new gutters, fascia, external painting, bathrooms, and a kitchen makeover. I'd rather stay put and spend $50-60 on fixing what we have, so that we can enjoy it, and so it can be ready for sale if we happen to see something that we like.

Practically, physically, and emotionally, moving is the last thing we should be considering. I need to get fit before my mastectomy in August. I think we can manage with an external laundry and not enough storage for a little longer, especially when decluttering would give us more storage space. Problem is, when Ben decides he wants to move, he keeps on and on about it until I finally give in - he nagged me to move back here to Tassie from 1998 until 2009. I've tried to talk to him about the benefit of practicing gratitude and eliminating negative thinking, but to no avail. He's too stressed to listen.

I have my next MRI scan tomorrow at noon (I mistook the time of the last appointment and missed it). I hope there are no unpleasant surprises on it. I haven't had any new neurological symptoms, there's no headache, and I don't have any nausea to speak of, other than this funny taste in my mouth and lack of appetite that makes it very hard to find anything I want to eat, and to eat well. The dietician at the hospital has prescribed Fortisip, a nutritional supplement, for me to take twice a day, but I'd rather be eating real food. Raw carrots, apples, bananas, weetbix, and yoghurt don't make a balanced diet, but they're the kind of thing that appeals to me. I don't like eating meat any more, and the appearance of raw meat repulses me - I will probably be able to cook some tomorrow, but I don't know if I'll be able to eat even something bland like butter chicken. I ate two eggs for breakfast nearly every day from the beginning of last year, so I'm sick of them as well. I'm going to call the dietician again, because I think I need some help. While it's good to be down to 76kg from my starting weight of 94.5kg in January last year, I know that it's very important that I get adequate nutrition. I have about 20 supplements that I used to take regularly, but I'm sick of taking capsules and pills.

After my conversation and social visit this morning, I collapsed on the couch in the sun and had a brief cry about how darned tired I am, and how much effort it takes to keep on a happy face, though I genuinely do feel happy when I talk to people. I need to do it more often, I'm a bit out of condition.

I'm trying to work out how to make people aware of Valcyte in Australia, it doesn't seem to be widely known in the brain tumour community here, and it disturbs me to think that drug that can significantly improve outcomes for high-grade gliomas isn't being used more widely in Australia. I'm so grateful that my oncologist was happy to prescribe it and to apply for us to get it on compassionate grounds. I've heard of another oncologist who "doesn't believe in it", and of another who was dismissive of the NEJM study because it wasn't a phase III trial. It really annoys me when clinicians get all anal-retentive about wanting randomised control trials to prove the efficacy of safe treatments for incurable diseases. Surely a good phase II trial with dramatically improved survival times is better than the current treatment?

I'd better try and get some sleep. The ends of all my ribs were aching last night because I accidentally took my gCSF injection a day early - it doesn't seem to make my pelvis or thigh bones ache so much any more. Having the sensation of aching rib-ends was unpleasant. I've taken some panadol tonight as a precaution.

Thank God it's not so cold today, it was making me miserable.

lumps and bumps and peculiarities

I had a few appointments last week - saw my breast surgeon about the area of micro calcification identified on the mammogram in January. I asked what their advice would be if I hadn't had a brain tumour. They said that the brain tumour needed to be taken into account. I said the brain tumour was stable or shrinking on the MRI evidence. I asked what would be the plan if I'd never had a brain tumour. They said a stereotactic biopsy (i.e., a biopsy done in a mammogram - two painful procedures in one). I said that I'd read evidence that biopsies could produce false negative results. Eventually we agreed that the area of abnormality could be ductal carcinoma in situ, or invasive ductal carcinoma. The first would conventionally be treated with a lumpectomy, chemotherapy, and radiotherapy. The second would be treated with a mastectomy, chemotherapy, and radiotherapy. My weakened bone marrow will not tolerate any further chemotherapy. My surgeon felt I'd already "had enough" radiotherapy.

I said I did not want to find that I had invasive breast cancer after doing my best to recover from an aggressive brain tumour. My surgeon was willing to offer me a prophylactic mastectomy if it will help give me peace of mind. We've scheduled it for the 7th of August.

In the meantime, I need to see my gynaecologist for a pelvic ultrasound of a "large pedunculated fibroid mass" next to my uterus. A fibroid was identified on a CT of my abdomen last year, and it was found to be normal when they did an ultrasound. It seems to have grown since then. I'm not aware of any specific symptoms, apart from a certain tenderness on the left. The CT also showed a fatty liver, which I didn't have last year. My GP and gastroenterologist weren't concerned about it, my LFTs have been okay-ish.

I sometimes feel like my body has been enlisted in some absurd black comedy. I have to maintain my hope that it will be alright in the end, and that sharing the insights gained from my experiences will benefit others in some way.

Uncle Noel passed away today

Sorry I haven't written for a while, I've had a virus for the last few weeks that has not quite gone away. My tummy is nearly fully recovered from the abdominal surgery done on May 30th, and my appetite is slowly returning. I even managed to cook a reasonable minestrone and an apple and berry crumble last night - the most cooking I've achieved in months, though I still get tired and a little dizzy from all the standing.

I'm going to take it easy today. It's freezing outside and I'm mourning the death of my Uncle Noel, who finally succumbed to prostate cancer at 630 this morning. His daughter Caroline kept vigil with him for the last several days. The cancer had already taken one kidney last year, and had spread throughout his body. I feel so sad that I couldn't be there with her, and that he had to suffer at all after they withdrew his fluids. She had to ask for him to be put on continuous pain relief - something they should have offered without her having to ask for it.

I'm so glad she was there to be with him, to hold his hand, to say that everything was okay. He was a fundamentally loving and good person who had a difficult life, and he isolated himself from his sisters for the last 30 years over a litany of real or perceived slights and resentments.

The whole affair illustrates how holding onto old wounds just reinforces them, and causes barriers to arise between people. The world would be a much happier place if people could just forgive and forget, and not allow their pride to prevent them from moving on, and from experiencing the love and support of others.